Sunday, May 13, 2007

Day 1 - Mother's Day 2007 - I've never blogged before. I've been online for 10 years now, and this is my first blog. I feel liberated in a strange sense today.

Today was a perfect day to start it. I'm day 12 post facial cross nerve regeneration surgery, and still recuperating. I am still slightly swollen in the jaw area, slightly "shrek-colored" there too, and still in a good bit of pain from the incisions in my leg and face.

Anthony and the boys had a family function to attend, and I had the afternoon to myself, after the wonderful Mother's Day celebrating we had amongst ourselves this morning.

So, for those of you that didn't know...I had cross facial nerve surgery with a plastic surgeon, Dr. Andrew Elkwood of Shrewsbury on May 1 at Monmouth Medical Center.

I know it sounds sooooo cliche, but I first saw Dr. Elkwood's Practice on Oprah a few years back, and the piece I saw had nothing to do with the surgery I had. I wrote down the name of the place and filed it away in a manila folder I keep called "The Paula File." The Paula File is where I keep things I clip out of magazines that I hope to use, buy or have someday (like those Christian Louboutin animal print open toe stilettos....they are sooooo happening in 2007).

So let's call it Karma that "thing" that led me to him. The piece I saw had to do with a woman who had lost in excess of 300 lbs. and needed reconstructive surgery for the excess skin she had on her arms, legs and body.

Dr. Elkwood, who is truly a nice and gentle man, took some live nerves I don't need (though the pain in my leg right now is pretty intense, so let's just hope he's right about that) out of my outer left calf, and made incisions on each side of my face (face lift incisions, if you will, in front of my ears) and implanted the nerves in the right side, and "fish-hooked" them under the skin, over the left bad side and connected them. Pretty cool, no? The hope being that the nerves will regenerate correctly, and boths sides of my mouth will move more symmetrically 6 months to a year from now. In addition, in the name of symmetry, Dr. Elkwood removed the"thing" (sinkenesis...sp?) which made my left eye move involuntarily with the left side of my mouth.

I met Dr. Elkwood, and learned that even though my Bell's Palsy was almost 10 years old(as old as Matthew), I was a good candidate (based on an EMG of the face I had) for this surgery that could possibly restore some of the symmetry I lost 10 years ago, as well as restore (at least for me personally) some of the self-confidence I lost back then (which I realize no one could possibly understand since you don't have Bell's Palsy) and alleviate some of the physical discomfort I felt over the last 2 years on the side of my face where the Bell's Palsy occurred.

I weighed the options for a long time, and in February decided it was something I had to try. I had tried everything else since I got Bell's Palsy, steroids, electric shock, acupuncture, vitamins, fish oil, prayer, positive thinking...sadly, none of them worked. Even before Botox was vogue, I went to see an Oncologist in Princeton in the spring of 1998 who wanted to experimentally inject what they were still calling "botulism" into my face to the tune of $30,000. Um...un tested experimental cow bred virus injected into my face???...not so much for me back then.

With Anthony's and my parent's support, my decision was easy for me to make as it was also understood by all those that mattered, and we agreed that we would wait until after we took the boys on our first real vacation to Jamaica in April.

I let Anthony take a bunch of pictures of me in Jamaica, knowing that it would be the last time my face would look like that, and I'm glad I did that since I have less than a dozen pictures of my self and my kids over the last 10 years with my "crooked face."

I was also extremely lucky to have my surgery documented by the Discovery Channel, and will let you all know via this blog when it will air on TV, maybe by late summer.

That experience was very surreal, talking about it out loud while it was happening. My Doctor has appeared on the Discovery Channel many times, and I guess he thought my situation was interesting and not common and put them in touch with me. I was thrilled to have the opportunity to tell my story in the event that others with similar facial disfigures could know that surgery is an option for them. The Discovery Channel crew was great too. Some of you will note an extra part of my surgery if you watch the Discovery Channel but I haven't shared it with all of you, it's rather personal, and I hope to keep it that way until it airs at least! ;-)

I also hope to use this blog to advocate for Matthew and Benjamin and for Fragile X Syndrome and raise awareness on their behalf.

I will post pictures, other interesting things as they happen, but I am looking forward to having one central place for this instead of e-mailing hundreds of different people in my address book, family, friends, Fragile X Parents, SCOPE (special ed PTO) parents, Marsh friends, MK friends, RS friends, you'll all get it in ONE SPOT!

Sincerely,
Paula

11 comments:

Anonymous said...

I found your blog on google. I too have fragile x syndrome children and share the same journey as you. I can't wait to hear more about your family and your journey with fxs

Christina
my blog: http://fragilex.wordpress.com/

Unknown said...

Paula
I am so glad to hear your surgery turned out okay. If you need anything let me know. Say his to the boys!!!
Jen Occhipinti

Anonymous said...

I'm so excited by the Discovery surgery show! I love eatching those things! This had to be a hard decsion for you. Kudos to you for doing it and be brave enough to have filmed for others to help them decide! :)

Anonymous said...

Hey P,

Glad things are working out for you. I hope to see you on the Rick road sometime this year. I really do miss hearing from you and I have to say you have two of the most handsome boys!

Unknown said...

PMF - Good for you. I like your first blog entry. I'm most happy to hear from you post surgery. You didn't say how it went... Was it "successful"? A great big THANK YOU to you, Anthony and the boys for supporting us on our Cystic Fibrosis Great Strides Walk. Funny how people with their own challanges tend to be willing to get on board and support others who face similar challanges! We must be a pretty strong crew. I'll look forward to more updates and your speedy recovery. :-)

-Timmy

Anonymous said...

Hi Paula,

This is a great idea and I will check your blog often. I always enjoy geting together with you in person and laughing together at all the crazy things in our lives but you are so creative I am sure your blog writing will keep me in stitches.
I am so glad you are doing well after the surgery and hope to see you Antony & the boys soon.
Love to all,
Charlotte

Fancy said...

Paula,
It is so good to hear what is new with you and your wonderful family. I heard from Mojo about your surgery and hope it has gone well (post-surgery). We have to all get together sometime soon - it is difficult with all of our busy schedules.
Lots of Love!

Anonymous said...

Happy Hubby who loves you so much!!!!!!

U GO GIRL............

Unknown said...

I always love hearing from you. Both of us wish you a speedy recovery. Let's try to get together this summer. Would really love to see Mattcho Man and of course Ben too. Say hi to Anthony as well. Love Doris and Butchie

Anonymous said...

Hi Paula,

Glad you are recovering. Hope the surgery is a success. I'll be sure to watch it when it airs on Discovery.

My guess is you had more cosmetic surgery done. I understand the largest expense is booking the OR. I have been researching having work done specifically tummy tuck. It's a dream. Even though I have managed to get down to a size 7 and feel great. I want to get rid of the excess skin the weight loss has left behind. Can you give me more info on your Dr.?

My love to Matty, Ben and Anthony

I pray this works - Love Rosa

Anonymous said...

Hello Paula
I was glad to be updated since all of my information comes via the grapevine. I wish you all the best in your recovery. The boys are so handsome! I will continue to read and will be interested to see the Discovery channel special this summer. God bless the fasicano family.
Hugs to all,
Liz Albright De La Hoz